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Stopped Elmiron - now in a major flare

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  • Stopped Elmiron - now in a major flare

    Hi everybody,

    I have been in an extreme flareup for about 2 weeks, not even helped by a rescue instillation...I'm getting desperate. I can't even walk without stimulating the desire to pee, and the pain is constant. My insurance company took Elmiron off of the formulary so it went from $15 to $175 for a month's supply. I really can't afford that, so I declined the refill and decided to see what would happen without it. After all, I reasoned, I have been taking Elmiron for three years, and have not improved noticably. But...before when I was taking it, I had remissions, especially after instillations...Now I don't know what to do. Is there anything else, a natural product or supplement or other drug that mimics the effects of Elmiron? Any advice would be appreciated!

    Victoria

  • #2
    Victoria, there is a product sold in the ICN shop, I think it's called Algonot, that some say has the same mechanism of action of Elmiron. You will find it more affordable at this point. I can't say for sure if it works the same way as Elmiron, but I thought I'd let you know that product is there. Maybe you can do a search on the boards to read more about it and decide if you would like to try it or not.

    I'm sorry your insurance company is making life hard on you. I'm sorry you are flaring.

    Some of us find that self-help strategies (heating pad, hot water bottle, ice pack, changes in diet, etc.) really make a big difference in our comfort levels. Some of us find that pain meds really help during flare-ups. (I like Ultram the best. It's not a controlled substance, so sometimes doctors are more inclined to prescribe it rather than narcotics.)

    Hope you feel better soon,
    Blessings,
    Lori

    Comment


    • #3
      Hope you feel better soon. Maybe you could up the frequency of your instillations (with doc's advice) and see if that helps?
      Algonot/Cystoprotek is meant to be kind of like Elmiron but glucosamin and chrondroitin etc. I am in the same position as you - didn't think Elmiron was helping at all but now got extreme frequency.

      Something that helped my constant urge was 10mg of elavil. You may want to try that in the meantime. I always thought it was just for pain.
      IC diagnosis: Aug 2005
      Symptoms: Urgency, urge and irritation and urethral symptoms
      Flareup for 1 year til July 2007 (had constant urge and pain et al....)

      Elmiron 100mg 3x daily April 2006 - present
      Enablex 7.5mg nightly Sep 2007 -present
      Atarax, Elavil 10mg nightly (Dec 2007)
      Acupuncture - November 2007 - present

      (Past meds for IC- Cystistat, Elavil 30mg, Ditropan, long term a/bs, Prednisolone, Cimetidine, Neurontin)

      Comment


      • #4
        desert harvet aloe vera

        please try desert harvest aloe vera its
        $30 a for 90 pills

        http://desertharvest.com/
        Quit ELMIRON due to hair loss
        Cystoprotek ROCKS!

        find me on FACEBOOK -
        search my email [email protected]

        Current Meds:
        AM Cystoprotek & ATARAX 50mg
        Dinner CYSTOPROTEK
        PM Elavil 25mg

        Comment


        • #5
          Originally posted by veeneck
          Hi everybody,

          I have been in an extreme flareup for about 2 weeks, not even helped by a rescue instillation...I'm getting desperate. I can't even walk without stimulating the desire to pee, and the pain is constant. My insurance company took Elmiron off of the formulary so it went from $15 to $175 for a month's supply. I really can't afford that, so I declined the refill and decided to see what would happen without it. After all, I reasoned, I have been taking Elmiron for three years, and have not improved noticably. But...before when I was taking it, I had remissions, especially after instillations...Now I don't know what to do. Is there anything else, a natural product or supplement or other drug that mimics the effects of Elmiron? Any advice would be appreciated!

          Victoria
          hi,
          I've sent you a privat message regarding Elmiron.
          take care

          Comment


          • #6
            Hope you feel better soon, Wish I had a magic wand to zp this flare away.

            Comment


            • #7
              Algonot, cystoprotek, and Desert Harvest Aloe Vera capsules are all supposed to do more or less the same thing, coat the bladder. They are all OTC and I think they're all available in the ICN shop.

              You should also look into whether elmiron's manufacturer has any programs for supplying the drug free or at reduced cost in cases of financial hardship.

              You should also file a grievance with your insurance company, on the grounds that elmiron is the only medication that is FDA approved to treat IC, and taking it off their formulary is essentially denying you any treatment for your condition. That worked for someone else I know.

              I'm very sorry this happened to you. I'd recommend trying the Aloe Vera while you fight it out with your insurance co. I know that trying to argue with your insurance company is stressful and is probably the last thing you want to do when you feel so bad, but in the long term it's for the best.

              Try to relax a little, ok? Just rest for a while, and then take up the gauntlet again.

              You have all my sympathy.
              Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
              Wishing you happiness and good health, and all the best out of life.

              Peace, Carolyn
              ___________________________________________________

              Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


              On the Beach with IC

              Comment


              • #8
                mail order

                look into MAIL ORDER SCRIPTS

                At walgreens elmiron costs me 84/month
                mail order..its 100/3 months
                Quit ELMIRON due to hair loss
                Cystoprotek ROCKS!

                find me on FACEBOOK -
                search my email [email protected]

                Current Meds:
                AM Cystoprotek & ATARAX 50mg
                Dinner CYSTOPROTEK
                PM Elavil 25mg

                Comment


                • #9
                  Getting back to "normal" (for me).

                  Thanks everyone for all your suggestions. Unfortunately I have not been able to catheterize myself, so I haven't been able to really take advantage of the instillations of heparin, etc. They work well for me when I get them at the doctor's office, but I can't get there that often. I've tried the aloe vera before with no luck...and I took Elmiron consistently for nearly 3 years before the insurance company took it off the formulary. My next move is to try the Algonot...I just keep trying things and hoping for the best.

                  As is typical for me, my flareup has calmed down after about two weeks. This is what usually happens. I tend to think it's related to diet, but of course I could be wrong about that. It seems like I can eat or drink one "forbidden" thing and get away with it, but if I progress to two or three bad things over a few days, then I seem to hit "critical mass" and go into a flare. I can't seem to get used to life without salad dressing, fruit, coffee, etc. I've managed to stay away from vinegar and citrus but I am constantly falling off the wagon with other things...even super low acid coffee causes a temporary increase in symptoms (if I went to Starbucks you'd have to drag me out of there on a stretcher).

                  Anyway thanks for reading this and for caring. This week I am going to undergo a cystoscopy at UCLA because I had blood in my urine a few weeks ago and they take that pretty seriously. Probably just aggravated those Hunner's ulcers.

                  Best wishes,

                  Victoria

                  Comment


                  • #10
                    Cystoprotek and others

                    I'm so sorry to hear of your IC pain. I'm taking aloe Vera (Dessert Harvest) and cystoprotek along with the Elmiron. I was feeling really good on it till I got bronchitis. I'm sorry your insurance is such a stinker. I also use Prelief and find a 1/2 spoonful of baking soda really does help during a flare. I had a major flare this week due to a new antibiotic (bronchitis) the dye got me. I took a pain reliever, urelle as an analgistic, another cystoprotek and then finally the heating pad and baking soda with the amitrityline and hydroxzine I take at night. Gee whiz-won't you be glad when you can reduce your meds with good results?! I take physical therapy also and it really has helped a lot. My PT specializes in pelvic floor dysfunction and I think she is an angel.

                    In HIs grace,
                    Susan

                    Comment

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